Monday, July 9, 2012

Hasn't happened in a very very long time, but there it is. There's no escaping the symptoms: that overwhelming heaviness in every muscle fiber, the strange icy-face sensation, the cessation of all but minimal cerebral functions.

.::What's my name, again? And who is this nice man that seems so attentive?::.

I find myself camped out in my usual crash posture, which is stretched out on my couch, air conditioning cranked to goosebump inducing temps, and laptop balanced on my belly. I'm attempting to use my two functioning brain cells to go above and beyond their usual capabilities and help me to figure out my crash implications. I know that I've overstepped my energy boundaries big time, but where was the tipping point? What could I have done to prevent this crash? And how can I minimize it's length and severity?

I feel as though I have behaved like Lulu does when she's out on a walk. She's a TERRIBLE walker. When I clip on her retractable leash, she makes every effort to lunge ahead, and invariably has a very unpleasant neck-wrenching experience as the length of the leash ends. She coughs and gags as her collar stops with the leash but her little body doesn't. (I have to get that woogie a harness, come to think of it, before she does something nasty to her fragile schnauzer neck.)

Maggie, however, seems to instinctively know that she can only venture a certain distance ahead of me. She trots ahead but only as far as her leash allows.

I need to be more like Maggie. I need a better awareness of my leash -- or energy -- limits. How many times must I remind myself of this, people? Grrrrrrr.

I something of an excuse this time, though. Just a teensy one. The thing is, my leash length has changed significantly ever since my rituximab infusions. I used to have a tentative understanding of my body's limitations. And even though I didn't like my limits, I knew approximately what they were.

Then, things changed.

My leash slowly streeeeeetttttcccchhhheeedd to a longer length after I started to enjoy the benefits of my new drug regime. Woo hoo! I began to test my limits and was delighted with my new ability to do more. My previously mandatory afternoon naps became optional. I asked John to take my bike down from the garage attic and to pump up it's tires. I was thrilled to enjoy every minute of my son's wedding without dissolving into a quivering, perspiring, mindless mess. I lunged ahead to just keep doing all that I could do, thinking that my new leash went on infinitely. Until it didn't, and my new-found freedom came to a crashing halt.

So. Here I am horizontal, mulling things over rather sullenly.

I have come to a few conclusions after pouting here on the couch for an afternoon.

First, and foremost, I realized that I have forgotten what a nasty flat-on-my-back crash feels like, and what a fortunate thing that is. Fortunate? Yes, because enough time has elapsed since the last one that I had almost forgotten how crummy a crash experience is. If I come out of this experience with energy levels similar to those that I had previous to it, I will try hard not to take that energy for granted.

Secondly, I have a suspicion that my latest travel to the midwest's heat and humidity was probably a bigger stress to my body than I anticipated. While dealing with the oppressive heat -- like everyone else in the USA was -- my body had to work unbelievably hard to maintain a normal temperature. On my first evening in my mother-in-law's home, I actually ran an elevated temperature after several hours trying to sleep in the stifling heat. We retreated to an air conditioned hotel room the next morning. Those nights when I was able to sleep in blissfully cool temperatures helped me keep going as long as I did.

Meanwhile, during those hot days, I found exquisite relief in the lake conveniently located at the edge of Mom-in-law's lawn. Pride? Pfffft. I had none as I threw on my swimming suit and paraded in full view of my relatives to plop my pudgy body in the cool water. I took a life preserver with me and looped my arms through it's straps as I just drifted. After I was sufficiently cooled down and skin wrinkled, I squished my way back to shore and flopped down on the grass to let the breeze cool and dry me. Wasn't a pretty picture. I didn't care. I was just trying to survive.

I should have bailed on the family entertainment and gatherings much sooner every day. I should have retreated to the hotel for sleep, and battery re-charging. But I was so determined to not miss a thing that I didn't. Especially after several of my relatives and friends had commented on how much more energetic and healthy I appeared since my last visit. So, I gritted my teeth, sucked down way too many caffeinated drinks and popped Provigil, determined that I WOULD be fine.

As I boarded my flight heading home, I thought perhaps that I had pulled it off. But after our second layover -- yeah, two layovers, bleah -- and we began our final leg of the journey, it began.

Busted. So, so, busted.

I wobbled into the house, fell into bed, and stayed there for a day and a half.

So. Today I find myself experimentally testing my limits yet again. Still a bit wobbly, still feeling brain-fogged, still taking far too much energy simply to make my way up and down the stairs in our house. But the freezing face thing is gone, I was able to shower and go to church yesterday, and even took some time to water flowers in the garden.

Not bad.

Perhaps, if I behave myself, the worst of the crash is already over. Maybe, just maybe, this won't require a whole week to recover. I want desperately to feel like I did about three weeks ago.

6 comments:

I am in the midest of a great burst of energy- my muscle strength is better, I don't need naps! We also have had two weeks of oppressive heat and humidity. I do remarkably BETTER with it! My enemy is cold. With Raynauds I literally shake, tremble and almost convulse with the slightest cool breeze or cold. My hands won't function properly, I can feel my energy directed at my shivering and over response to the cold. Living Canada you can imagine my dilemma.We have below zero temps 9 months of the year. It makes all my sjogrens symptoms much, much worse including it appears my fatigue.So sorry you have reached your max. Sounds as if the energy expended went to good causes- something to be factored into the equation !

Cargillwitch, I'm also in Canada, and I used to think winters were bad due to our cold weather and symptoms of Raynaud's. I've been noticing the last few years that the heat and humidity really does a number on me.I find it difficult to find a good body temperature, I'm either too hot or too cold, when everyone around me is comfortable, and I still have joint pain to endure, and sun to avoid.

So sory you're crashing, Julia. I'm amazed you were able to accomplish so much without having a crash earlier. This illness dupes us into believing we're better when we have a good spell, but alas, it's only a false image. Be well.

You sure have my empathy. Kind a like hitting a brick wall. And I still do not enough common sense to self-regulate ... which means that - after biking 9 miles yesterday morning in Tampa's summer heat - I am also parked on the couch. That's after spending two hours this morning parked on the "couch" @ the dentist' office. (What's one more filling? I think this is #21) Its been a heck of a way to get over my dental phobia. I digress. I hope you begin an upward swing quickly. I have gone thru this so much that I try to cope w/my fear of feeling so awful by reminding myself that "this too shall pass" !

Have you connsidered that stress might be a factor here, even when you are enjoying yourself there is stress, you went crash after the event not during it. You should have gone to England not the mid west, we had to turn the heating back on tonight it is so cold. We have the heaviest rainfall on record this year, when it has been warm it is like sultry New orleans. With the dog leads, what about using bungie elastic and a baseball catchers glove ;)

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